Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

Pandemic Mental Health for the Immunosuppressed

This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.

Of the many thousands of articles published in the New York Times last year, the single most-read article was about the emotional state of languishing. Symptoms of languishing include feelings of aimlessness, inability to concentrate or complete tasks, mental numbness and generalized apathy.  Although languishing is not depression, it indicates a lack of mental health. The popularity of this article suggests that many identified with these emotions during the ongoing pandemic, but I suspect that for those of us who are immunosuppressed, our languishing is prolonged and perhaps more profound, given we are so often totally overlooked in the development of Covid-19 prevention and treatment methods.  The excitement of getting vaccinated vanished as we subsequently learned that immunosuppressed people may not mount an effective immune response.  The excitement of a passive-type vaccine vanished as we learned it is not widely available.  The knowledge that such a large component of the general population is refusing to be vaccinated increases our risk, as well as our anger and anxiety.  All this has been emotionally exhausting which leads to languishing.

Those of us who are immunosuppressed usually focus, appropriately, our energy and time on the many challenges relating to maintaining our physical health.  However, it is critical to simultaneously address and maintain our own mental health.  If you feel that languishing describes your emotional state, here are some ideas to reduce your languishing and improve your mental health:

The Fundamentals:  Sleep, Diet and Exercise.  An overwhelming amount of information is available on these three basics; thus, there is no lack of knowledge but often there is a lack of accurate self-awareness.  To increase your own awareness, it is worthwhile to check your actual levels of sleep, diet and exercise by simply performing an audit for a week.  For each day, record your actual amount of sleep, what you eat, and how much you exercise.  Then after a week, review the results.  Are you sleeping enough, but not too much?  Are you following what I consider to be the most concise description of healthy eating, which is Michael Pollan’s “Eat food. Not too much. Mostly plants.”?  (His admonition to “eat food” essentially means to not consume processed food.)  Are you meeting the national guidelines of at least 150 minutes of moderate exercise per week and twice weekly strength training?  An added benefit of such an audit is that simply by observing your own behavior, you will likely improve your behavior.  These three areas are fundamental to both your physical and mental health.

Need for Connection.  Humans are incredibly social, and we have all been abruptly separated during the pandemic.  Even if we have not experienced the anguish of losing loved ones, we have experienced the grief of losing our former lives and as well as our future plans.  After deleting events we had planned from our calendars, our comparatively vacant calendars became sadly representative of the emptiness many of us feel while languishing.  Moreover, immunosuppressed individuals have recently watched others return to gathering for holidays, weddings, funerals and birthdays – and we sometimes had to argue about why we could not participate.  How do we best maintain satisfying relationships while keeping safe from infection?  Inadequate as they may be as replacements for in-person interactions, regular video conferencing, simple phone calls, texts and emails can help maintain connections.  It poses zero risk of infection to pick up the phone and call or text someone. Inviting friends for dinner outside while socially distanced poses little risk.  Rather than lamenting the loss of all your planned events, create some.  For example, my husband and I had planned a trip to Italy with friends to celebrate a milestone wedding anniversary.  Sadly, those plans were cancelled so on our anniversary day my husband wore his tux and I got into my wedding dress (almost – couldn’t quite completely zip it up!) and we drank champagne and ate outside at a distance with two photographically talented friends who took pictures.

Rapid antigen tests are no longer reliable enough to determine that guests are not infectious at the moment of testing, but if you can get rapid PCR testing, that could provide more security.  With Omicron, the viral load in the nose early in the disease may be too low to trigger a positive antigen test, but not too low to transmit the infection. In other words, all the usual precautions including masking and social distancing are still the main defense.

For those looking for a way to connect safely with others who have CLL and are immunocompromised, CLL Society Patient & Caregiver Support Groups may be a beneficial opportunity to pursue. Being a part of a CLL Society Support Group may offer you the connection you are craving with individuals in similar circumstances who can empathize with your feelings of languishing. All support groups are being held virtually at this time.

Sense of Accomplishment.  The feeling of aimlessness, that every day is “Groundhog Day,” can be somewhat negated by determining to use each day to accomplish something.  In the evening, make a realistic list of what you want to accomplish the next day.  These accomplishments needn’t be monumental; in fact, they shouldn’t be as that will only lead to frustration.  But what specifically do you want to accomplish with this one day of your life?  The list can include items related to your work and family responsibilities, some mundane home tasks, as well as perhaps some aspects of longer-term plans.  For example, what about an online class to help you learn another language, cook new dishes or play an instrument or to paint?   Include on your list how will you make a connection with others, even if it is something as simple as writing a lovely thank you note.  Of course, be certain to include on your list how you will exercise and eat healthy meals. It’s ironic that prior to the pandemic many of us craved unscheduled time, but now excessive unscheduled time contributes to languishing.  Developing your list and a resultant schedule will add needed structure and routine to your day.

Something that provides a special sense of accomplishment is helping others, and there are numerous opportunities to do so safely.  Could you tutor online?  Deliver contactless meals for charitable organizations?  Walk a neighbor’s dog?  The CLL Society probably has tasks for volunteers that can be done safely!  Even small kindnesses that aren’t on your your list, such as overtipping, can have benefits for you as you realize that an extra dollar likely means much more to that worker than to you.

The very act of crossing items off your list is gratifying because it documents your accomplishments for that day and counters your languishing self-talk that you have accomplished nothing.  It’s a great boost for your mental health to look back and be able to say to yourself “this was a productive day.”

Plan special events.  In addition to your daily routine, schedule some events to which you will look forward.  Although immunosuppressed people generally haven’t been able to stray far from home, you can plan some safe events that you enjoy.  Going to a beautiful location and having a picnic or taking a hike are low risk.  Similarly, camping – or upscale “glamping” – allow for overnight trips with low risk.  Plan to view a favorite program or stream a movie you’ve wanted to see, but don’t mindlessly scroll around as doing so does not contribute to your mental health.

The psychological underpinning of these suggestions is to regain control over your life.  You cannot control how the virus will mutate, who will get vaccinated, if there will be lock-downs or whether we will reach herd immunity.  Rather than having your emotional state determined by the daily pandemic events over which you have no control, take control yourself. You have control of how you respond to these trying circumstances.  Controlling your response not only includes your overt behavior but, importantly, also your own internal self-talk.  Your psychological state is extremely influenced by your cognition in terms of your thoughts and what you are telling yourself.  Try to stop focusing on “when will all this be over?” or engaging in catastrophizing thoughts such as “I will never be able leave my house again” or “I will die because people won’t get vaccinated”.  This type of self-talk will not promote your mental health.  To help control your self-talk, people often find value in journaling or meditation to acknowledge the loss and at the same time, emphasize gratitude for all that we do have.

Although I well understand you may not feel like doing any of these ideas as lack of motivation is part of languishing, realize it is in your own self-interest to implement them.  If instead of languishing you are experiencing debilitating depression or anxiety, reach out for professional help that is now readily available online.  Finally, know that everyone is suffering in some way during the pandemic, so be gentle with yourself and others.

Nancy A. Marlin, Ph.D. is Professor of Psychology and Provost Emerita at San Diego State University.  Being immunosuppressed herself due to a solid organ transplant, she personally well understands what life is like for the immunosuppressed during the pandemic.